The question posed this week, for the Summer Disability Blog Hop is on the topic of the influence of disability in your life:
– For parents of children with disabilities: How have earlier interactions with individuals with Down syndrome – or other disabilities – influenced how you felt and feel about your child’s diagnosis?
It didn’t take me but a moment to know who I wanted to write about and their impact on our lives before and after Jack Jack was born.
Mr. Incredible and I began looking for other families to live with and work with in Afghanistan, shortly after Violet was born. We knew a few couples and single people, but were really hoping to connect with someone would also be raising small children in Kabul. We knew that a couple we’d met in Afghanistan, also from Colorado, had their first child just a month before we had Violet and that they were thinking of returning. to Kabul. Just what we wanted!
But, we’d heard something else, startling and worrisome. Their little guy, Sam, had been diagnosed with aniridia, the absence of the iris. Aniridia causes visual impairment and can also come with tumors in other parts of the body. Goodness, we thought, how could you take a baby that is blind to Afghanistan? How could that possibly work out? (The irony, yes, I know.)
We met Sam’s parents at a mountain get away home and sat our two six month old babies down on a blanket together. And from that moment, on, Violet and Sam were best friends. I was pretty much in awe of Sam’s mom. She grew up in South America, climbed mountains and hiked the Grand Canyon like it was no big deal. From my point of view she faced Sam’s disability the same way — challenging, and difficult, but met with grace, prayer and a steadfast faith in Jesus, it wasn’t impossible. They debunked the “special parents for special kids” myth right away — they were too much like Mr. Incredible and I to distance ourselves or put them up on a pedestal. Sam’s mom stopped pity and condescension in their track — a lesson I remembered when it was our turn.
Our families met again, this time in Kabul, Afghanistan. Violet and Sam did everything together. They learned to walk, then run around the thick Persian carpets of our homes, kicking tea cups and trays of candy over as they went by. They munched on Afghan naan and fresh fruit while Sam’s mom and I went over Farsi vocabulary words. We also talked about how other people perceived Sam. For the most part, Afghans had never seen white person with any sort of disability. There was an assumption that if you are from America, a doctor can fix anything. They thought illness, disability and sadness to be something Americans were immune from. The Afghan women questioned Sam’s mom pretty intensely about what she ate, how old she was and what did her husband think?? In other words, no worse than a trip to Wal-Mart here in America!
Every now and then Sam’s mom would voice her self doubts — had she been too old, was it somehow her fault? Her eyes would fill up when she thought of Sam getting older and not being able to play sports, or being made fun of by other kids. These were the exact fears I found myself facing and when I was tempted to go about pretending everything was sunshine and rainbows, I thought about those conversations and knew it wouldn’t do my other friends any good, if I didn’t share my thoughts and fears with them.
Sam and Violet stayed good friends, even when our families lived thousand of miles apart. She occasionally asked why Sam wore glasses and we talked about how people can learn to read with their fingers and how she needed to answer him when he called her name, even if she was standing near by. If we saw another little person wearing glasses, she’d smile and inevitably ask when would we see Sam again.
When Jack Jack was born, Sam’s mom sent her congratulations — refreshingly free from pity. When we met for lunch we talked about “things people say” and laughed. Sam and Violet, who hadn’t seen each other for about a year, ran to each other and embraced for a moment and then took off running toward a new adventure.
Because I knew Sam and his family, when it came to thinking about Jack Jack and his diagnosis, I had a great example in front of me. Sam and Violet and their friendship; the way Violet already had a frame of reference for how people’s bodies can look and behave differently; and most importantly, the way they took the diagnosis and didn’t let that stop them from following their hearts and calling and it gives me courage to do the same.